Stark inequalities in pulmonary fibrosis care

New report reveals stark inequalities and avoidable delays in pulmonary fibrosis care across the UK.

Pulmonary fibrosis is a terminal lung disease, with outcomes comparable to many advanced stage cancers. A landmark new report from leading charity Action for Pulmonary Fibrosis shows that patients experience serious delays of up to two years for diagnosis, treatment and support, despite the condition having a life expectancy of just three to five years.

An estimated 150,000 people are living with pulmonary fibrosis in the UK and early diagnosis and treatment is crucial to slow disease progression and maximise quality of life. Despite this, there are currently no standardised national pulmonary fibrosis care programmes.

The State of the Nation report, which surveyed more than 1,200 people, found those living with the condition face long delays to diagnosis and a ‘postcode lottery’ to access specialist care and support.

This is in stark contrast to cancer, which aims for patients in England to receive a confirmed diagnosis within 28 days of being referred by a GP and to begin treatment within 62 days. Additionally, though progression of pulmonary fibrosis can potentially be slowed if caught early, unlike cancer there is no chance of cure or remission for those with the disease.

The State of the Nation report shows that one in three respondents presenting with symptoms such as breathlessness and a persistent cough were initially misdiagnosed, often with asthma or chronic obstructive pulmonary disease. A third waited more than a year for a confirmed diagnosis and nearly one in five reported seeing a medical professional at least five times before being referred to a specialist.

“Pulmonary fibrosis care is not equal and too many people are being left behind.”

Patients are also subject to a ‘postcode lottery’, among those diagnosed within three months, 40 percent lived within 20 miles of a specialist centre. By contrast, almost half of those living more than 100 miles away waited up to two years for a diagnosis, on top of the physical, emotional and financial barriers of having to travel further afield. Delays to diagnosis can have lethal consequences if patients progress beyond a point where disease-slowing treatments are effective.

Even after diagnosis, support can be inconsistent. Access to pulmonary rehabilitation, physiotherapy and psychological support varies widely depending on where people live. Many said they received poor information or coordination of care and only seven percent said their PF care was well coordinated with their GP.

The report found PF drug treatments can also impair quality of life. While early treatment is essential, three quarters of respondents reported multiple debilitating side effects from antifibrotic medication.

Daniel Saxton, CEO of Action for Pulmonary Fibrosis, said:

‘Our State of the Nation report is built on the experiences of our community across the UK. It tells a clear and consistent story – pulmonary fibrosis care is not equal and too many people are being left behind. But the report doesn’t just outline what is wrong – it shows us where real change is possible.

‘At Action for Pulmonary Fibrosis, we’re already pushing for faster, more accurate diagnosis, campaigning for equal access to treatment and support and putting lived experience at the heart of everything we do. We’re calling on those who shape pulmonary fibrosis services to work with us to ensure everyone affected can access the care they need, as close to home as possible. Change is needed urgently. Lives depend on it.’

To help tackle the devastating impact of this disease, Action for Pulmonary Fibrosis is calling for urgent nationwide improvements to pulmonary fibrosis services. This includes bringing care closer to home; providing equitable access to diagnosis, treatment and supportive care; time-bound diagnosis and treatment pathways similar to cancer targets; and implementing standardised care pathways across the UK.